PANDAS? 15?

[momtobpkid]

Ok I will try to keep this brief, as my son is very complicated and has been treatment resistant Bipolar Disorder since the age of 6, sxs since the age of 2. He has been on EVERY med aside from Clozaril for tx of Bipolar Disorder, depression, OCD, ADHD. He also carries a dx of PDD. After realizing that conventional medicine was going to result in my son living in an institution, well I decided to see an integrative psychiatrist. He is now nearly off all meds and on EMPowerPlus, AminoPowerPLus, and probiotics. The new doc ordered a ton of tests. IgG severely high for gluten, casein, peanuts. So we started the diet on Sunday. Not all of his tests were back at the time. So tonight I get a couple others back from the doc in my email box. One was the stool analysis, which had VERY high yeast, meaning his yeast treatment did not work, so we need to address this ASAP. The other thing is his strep antibodies were very high. He has not had an infection for probably a year, never had typical sxs, always different sxs each time. Has had neg cultures tho. I never noticed anything really off before the onset of illness. His behavior is that of a normal child when he is ill, meaning he is down like 20 notches. He is only OCD when he is manic. He has violent mood swings, psychosis, etc, which have all improved greatly on his current vitamin treatment.

 

For one, IDK if a 15 year old can be dx with PANDAS. Another thing, yeah first line tx is antibiotics, but if my son takes antibiotics it will screw up the yeast even more in addition to cause the effectiveness of his vitamin treatment to go down drastically. There is no way he can take steroids, even Nasonex for 2 days makes him psychotic. I highly doubt Tricare would cover the IV stuff, plus, he is not even textbook PANDAS. So I know that the doc is going to want to decrease these antibodies, but how? None of the standard treatments would work. He was just on Omnicept for 5 weeks to get a clean CT scan with no noticable difference in behaviors and he was actually actively homicidal and in the hospital at the time. Ideas?????

[Chemar]

Hi and welcome

I am just bumping your post up so others can respond.

all the best to you and your son

 

 

 

 

 

 

 

Ok I will try to keep this brief, as my son is very complicated and has been treatment resistant Bipolar Disorder since the age of 6, sxs since the age of 2. He has been on EVERY med aside from Clozaril for tx of Bipolar Disorder, depression, OCD, ADHD. He also carries a dx of PDD. After realizing that conventional medicine was going to result in my son living in an institution, well I decided to see an integrative psychiatrist. He is now nearly off all meds and on EMPowerPlus, AminoPowerPLus, and probiotics. The new doc ordered a ton of tests. IgG severely high for gluten, casein, peanuts. So we started the diet on Sunday. Not all of his tests were back at the time. So tonight I get a couple others back from the doc in my email box. One was the stool analysis, which had VERY high yeast, meaning his yeast treatment did not work, so we need to address this ASAP. The other thing is his strep antibodies were very high. He has not had an infection for probably a year, never had typical sxs, always different sxs each time. Has had neg cultures tho. I never noticed anything really off before the onset of illness. His behavior is that of a normal child when he is ill, meaning he is down like 20 notches. He is only OCD when he is manic. He has violent mood swings, psychosis, etc, which have all improved greatly on his current vitamin treatment.

 

For one, IDK if a 15 year old can be dx with PANDAS. Another thing, yeah first line tx is antibiotics, but if my son takes antibiotics it will screw up the yeast even more in addition to cause the effectiveness of his vitamin treatment to go down drastically. There is no way he can take steroids, even Nasonex for 2 days makes him psychotic. I highly doubt Tricare would cover the IV stuff, plus, he is not even textbook PANDAS. So I know that the doc is going to want to decrease these antibodies, but how? None of the standard treatments would work. He was just on Omnicept for 5 weeks to get a clean CT scan with no noticable difference in behaviors and he was actually actively homicidal and in the hospital at the time. Ideas?????

[LNN]

Yes, a 15 yo can certainly have Pandas. And it's possible some of your son's issues could be strep/Pandas related. There are herbal and homeopathic options for treating strep and you can either explore that with your integrative doctor or some of the parents here may have specific suggestions for you.

 

TruFlora is a good probiotic for combating yeast, in addition to the dietary changes, and if you end up on antibiotics, s. boullardi is a probiotic that will not be wiped out by it. Yeast will certainly cause some of the symptoms you're seeing.

 

But the other thing that struck me was the ODD and bi-polar dx at such an early age. Some claim that bi-polar looks different in kids and are quick to label any severe mood swing as "bi-polar". I can only tell you that we've been seeing rapid mood swings - from sweet and happy to manic to raging evil witch - all in a matter of 20 min, in my DD6. For her, we strongly suspect high copper. Her copper levels are elevated and her zinc is low. (copper and zinc tend to be ying/yang metals - the move in the opposite direction of each other). As we've supplemented zinc, her mood swings became more intense, suggesting that the copper was being chelated out of her body but making a lot of noise in the process. One thing we've done is add in activated charcoal or bentonite clay at bedtime to soak up/bind toxins and help eliminate them from her body. And we are checking her copper/zinc levels every 2 months. By supplementing zinc (she has a genetic zinc deficiency known as pyroluria), we are also strengthening her immune system and re-starting her body's ability to detox (known as the trans-sulfuration pathway if you want to research it).

 

At this point in your battle, it's likely there is more than one thing going on. It sounds like you've finally found a doctor worth keeping and who will help you unravel things. You may also want to consider an integrative MD or D.O. (doctor of osteopathy) if there are certain things the psych can't prescribe or order. DAN! (Defeat Autism Now) doctors are also well versed in bacterial and viral infections, yeast problems, metals and chelation, and treating with alternative options. I know it's exhausting, but investigating multiple issues, including Pandas and metals, may be very worthwhile.

[PowPow]

Have you seen the integrative MD since you got the strep test back? Maybe antibiotics are NOT totally out of the question. We saw a great integrative medicine doctor and she was really, really careful with every medicine/supplement she gave. Things were very specific and there was often one thing given and then one or more given to "protect" from the negative effects of the first. It was very complicated, but very effective and precise. It was way more than adding probiotics to abx use.

I do not have specific advice for you, except to say that #1: I think you are completely on the right track using a integrative medicine doctor & 2: your kid has PANDAS or PANS or whatever this "thing" is(if it is even a singular entity that is affecting our children). That is something I think is possible, too- that we are all brought together here by similar symptoms- but maybe there is more going on then meets the eye.

 

 

I reread now that the integrative doc is a psych-- is he doing the supplement prescribing? Do you have an integrative med doctor? we saw a great one in northern VA

Edited December 23, 2011 by PowPow

[smartyjones]

does anyone have suggestions about the NIHM study for this situation or ability to access Dr. Leckman to help in this situation?

Edited December 23, 2011 by smartyjones

[hootie]

My kids (14 and 12) came down with P the first time this year. Homeopathy helped them both. They did take abx too, but relief came from homeopathy.

 

Do a search on this site for homeopathy. There have been recent discussions.

[momtobpkid]

Brandon's copper is normal and is zinc is a little high. May be bc of his EMPowerPlus and may even out in time, I hope. We do not have an integrative MD, just the psychiatrist that is board cert in psychiatry. I do not think we could afford another out of pocket doc at this point.

 

I am waiting to see if the doc will rx a med for the yeast or what she wants for tx since the only natural that it is susceptible to is the one thing he cannot have, which is grapefruit seed extract bc he is allergic. Hoping she will call in an rx and we will be able to get the yeast out like now.

 

If Brandon goes on antibiotics, he will need to increase his EMPowerPlus by 50% and that stuff is expensive, plus I think it would be risky to do with his yeast and the yeast interferes with the absorption of his vitamins. I see yeast as the first thing we need to treat and like now. Anything that interferes with the vitamins can put him at severe risk of hospitalization, which we cannot do bc of the vitamins. The hosp will pull him off and put him back on psych meds.

 

I feel like I am between a rock and a hard place.

 

Oh and Brandon is textbook BP, met adult criteria when he was 7. He has additional sxs tho

Edited December 23, 2011 by momtobpkid

[tpotter]

Brandon's copper is normal and is zinc is a little high. May be bc of his EMPowerPlus and may even out in time, I hope. We do not have an integrative MD, just the psychiatrist that is board cert in psychiatry. I do not think we could afford another out of pocket doc at this point.

 

I am waiting to see if the doc will rx a med for the yeast or what she wants for tx since the only natural that it is susceptible to is the one thing he cannot have, which is grapefruit seed extract bc he is allergic. Hoping she will call in an rx and we will be able to get the yeast out like now.

 

If Brandon goes on antibiotics, he will need to increase his EMPowerPlus by 50% and that stuff is expensive, plus I think it would be risky to do with his yeast and the yeast interferes with the absorption of his vitamins. I see yeast as the first thing we need to treat and like now. Anything that interferes with the vitamins can put him at severe risk of hospitalization, which we cannot do bc of the vitamins. The hosp will pull him off and put him back on psych meds.

 

I feel like I am between a rock and a hard place.

 

Oh and Brandon is textbook BP, met adult criteria when he was 7. He has additional sxs tho

 

 

DS 19 (today is his b-day was textbook case of bipolar. He was also textbook case of adhd before that, and textbook case of asperger's. The only reason I'm telling you this is because all his symptoms dramatically decreased when we started abx and/or PEX and/or IVIG. ABX stopped the suicidal ideations and sudden onset rages (literally within hours.) And this happened more than once. When he got PEX, one of his very serious OCD issues (fire setting) completely went away, and he became happy, and very, very nice (didn't last forever, unfortunately.) When he started getting IVIG, he got very, very nice again, and on the 2nd IVIG, his social skills jumped from about 7 years old to about 13/14 years old...overnight. I attributed the rest to really needing to learn the skills of older kids, and that is happening.

 

Unfortunately, these have not been cures, but he is certainly under control. Oh, btw, the adhd meds made him violent and out of control, and the bipolar meds did absolutely nothing for him. He was diagnosed at age 15, but we have since found evidence that dates it back to early childhood (and possibly since birth, but can't substantiate.) We used abx for several years, but have to be very careful with what we use now, because he developed c-diff several times. Yes, it's a problem, but honestly, the psychotropic meds for DS were far worse (and didn't help, anyway.)

 

DS just finished his first semester of college with straight A's (well, some A-) This couldn't have happened if we hadn't stumbled on the dx of PANDAS and Lyme.

 

PM me if you want to discuss more.

[momtobpkid]

I am thinking of starting him on garlic. It can help both the antibodies and the yeast. Have not heard back from doc, but she calls at odd hours and is traveling today, so I may not hear from her until tonight.

[sf_mom]

For yeast you could try Garlic: a clove 2 x day. Fresh garlic is best but some pills/powders are also good.... plenty of information on line about the benefits of garlic for yeast issues.

 

BUT I found this particular website on yeast to resonate with me.

 

http://www.danasview.net/yeast.htm

 

Looking at the biomedical aspect could help tremendously... I think you are on a good path but it sounds like you'll need to take it very slow based reaction to specific supplements, etc. You'll learn a lot from this forum so I encourage you to keep hanging out for all kinds of ideas that include detox, herbal remedies, homeopathy, vitamin/mineral support.

[momtobpkid]

For yeast you could try Garlic: a clove 2 x day. Fresh garlic is best but some pills/powders are also good.... plenty of information on line about the benefits of garlic for yeast issues.

 

BUT I found this particular website on yeast to resonate with me.

 

http://www.danasview.net/yeast.htm

 

Looking at the biomedical aspect could help tremendously... I think you are on a good path but it sounds like you'll need to take it very slow based reaction to specific supplements, etc. You'll learn a lot from this forum so I encourage you to keep hanging out for all kinds of ideas that include detox, herbal remedies, homeopathy, vitamin/mineral support.

 

Doc emailed me, waiting for reply. Looks like she will call in Nystatin or Difflucan for the yeast but also add in garlic or olive leaf extract. Waiting impatiently for her reply so I can go and get the stuff.

[nicklemama]

My DS was given a dx of Aspergers at age 6.5yo and also a secondary diagnosis of Bipolar II from a well respected neuropsychologist. He also had hyperactivity, OCD, intermittent explosive disorder and sensory processing disorder dx's. He turned 8 today and w/ PANDAS treatment over the last year, he does not meet the criteria for any of those anymore.

 

Your DS has been sick a very long time. He may indeed have bipolar, in addition to PANDAS and all the other things going on, but I'll tell you its very possible if you can get a handle on things, he may well not have true bipolar.

[momcap]

My DS8 was diagnosed with ADHD, selective mutism, separation anxiety, social anxiety, OCD, mood disorder-NOS (was attending a juvenile bipolar clinic), generalized anxiety disorder, and at age 4-5 was PDD-NOS. We found out about PANDAS 1.5 years ago. We have since found out he has lyme and bartonella in addition to PANDAS. We're 5 months into lyme treatment and he doesn't meet the criteria for ANY of his previous diagnoses anymore. Things aren't perfect, but they are literally night-and-day different from a year ago. His psychiatrist discharged him last month!!! We had previously tried psych meds and EMpower+ with little success. Antibiotics are changing his life. Please PM me if you want to chat more!

[momtobpkid]

We are starting diflucan and garlic and she wants to retest for both in a month or so. She said something about alternating treatment for the strep, but I am not entirely sure what she means by that. The difference with EMPower has been great and he is nearly off all psych meds. Things are still not perfect, but we are working on it. Lots of learned behaviors and it drives me nuts. Passive defiance, does everything but what he is supposed to do.

[Ann280]

My DS was given a dx of Aspergers at age 6.5yo and also a secondary diagnosis of Bipolar II from a well respected neuropsychologist. He also had hyperactivity, OCD, intermittent explosive disorder and sensory processing disorder dx's. He turned 8 today and w/ PANDAS treatment over the last year, he does not meet the criteria for any of those anymore.

 

Your DS has been sick a very long time. He may indeed have bipolar, in addition to PANDAS and all the other things going on, but I'll tell you its very possible if you can get a handle on things, he may well not have true bipolar.

 

 

Curious was your child on any meds for the previous diagnosis of bipolar or aspergers?